GRRRRRRRRR I HATE LE..........
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I haven't posted my GRRRRRRR because it seems to be so boring to me now. I am so sick of myself I can hardly stand it. I complain about the same old thing day after day after day: LE LE LE LE LE LE LE LE LE LE LE LE ......
I have talked with my PCP, MO and BS and they all know that this is a quality of life issue for me and that if I don't get some relief soon I will discontinue treatment and hopefully die sooner rather than later in order to avoid more LE misery. It is really a combination of the LE plus CIPN plus surgery-related neuropathic pain that just won't let up.
So I decided to get a bit more proactive, have researched all the latest crazes and fads and "promising" therapies, and have decided to try two approaches. Low level cold laser therapy has been shown to reduce limb volume in several pilot studies, and there is a Dr. Sheila Ridner who is involved in some of the studies and my LETherapist knows her and suggested I might try it. So I found a chiropractor who has the cold laser machine and am following the protocol from the studies that have been published. Theoretically it should show improvement in the next 3-4 weeks. In addition, I have investigated the lymphovenous microsurgery that takes lymph vessels and hooks them up to veins to bypass the blockages in the lymph system. The risk to this is that the pressure in the veins is higher than the lymph vessels, so the surgeon has to be extremely competent technically to get it right. I am going to see one of the surgeons who does this procedure to see if I am a candidate, if he thinks it would be helpful or if it would be too risky for me. At least I will have tried to see and do what I can to help myself. I am typically not one who goes toward the newest craze, and so I remain skeptical of both these approaches, but the one is low risk (laser) and the other will take a lot to convince me of its effectiveness.
In the meantime, GRRRRRR!!!!0 -
Linda, you're taking both approaches with such an intelligent, considered perspective that I don't think you're succumbing to a craze at all. I'll bet quite a few of us will be looking forward to hearing if the laser treatment brings any benefits, and also what you learn in your continuing investigation of the surgical treatment. Thanks so much for sharing here, and yes....grrrrrrrrr!0 -
Oh Linda, big gentle warm hugs to you. Yea LE sucks badly, and you already know how much I HATE HATE HATE Neuropathy, but I'll remind you just the same. If nothing else it might help some, knowing theres others dealing with this most miserable of conditions along side LE. I'll Grrrrr along with you.
Carol is right. There will be those of us eager to hear of your outcomes from your proactive approaches.0 -
Just checking in and to let you know that I REALLY STILL hate LE and I will never change my mind. If I had a million dollars I would gladly fork it over to get rid of this stupid LE………… The expenses sure are adding up to a million
SENDING BINNEY'S BROWNIES TO ALL LE PEOPLE .Enjoy! Only Le'rs get special chocolate eating privileges such as brownies, chocolate cake, chocolate pudding, chocolate milk, chocolate cheesecake, chocolate ANYTHING!
hugz4u all0 -
grrrrrrr!!!!! woke up this morning and cannot move my LE arm at the elbow. It really hurts....I think I may have done too much yesterday. It does not appear swollen but I am going to measure to be sure. I HATE LE!!!!!!
Maggie0 -
Hugz4u, are you SURE you won't change your mind and enjoy a little LE? Especially if it comes with brownies & chocolate???
Carol & Musical, thanks for the support. Maggie, hoping it is a strain and not LE! Binney, thanks for the brownies!0 -
Linda, I will never ever change my mind about LE. i would not even bestow it on my worst enemy.
Mags, Awe shucks.I hope your arm is doing better already. Maybe wrap.0 -
Hugz4u, I am totally with you. I thought the neuropathy was bad, and it is, and I still don't know which is worse, but together the CIPN and LE are just about as miserable as I can get.
So I have been trying very hard to learn to "accept" this misery that is not my choice. Doing the Zen thing or the Buddhist thing - trying to avoid grasping and hatred, trying to "breathe" and take each moment as it comes. I finally had a thought that LE is like a baby, you have to take care of the arm several hours a day, change it (at least it's not poopy bandages!), take care of it when it gets angry or cranky or hurts, etc. You love it, you care for it. You get the picture. Well, I swear I would like to just drop this baby on the doorstep of the nearest convent or at least put it up for adoption. Or maybe drown it like some sadistic folks have done with unwanted kittens.
Today I was with my massage/LE therapist, and she said there is more swelling around the front and back of the axillary area. I thought maybe it was my imagination, but it seems like it has felt more "full" and LE sleeves seem to be more irritating to the skin around the top of my arm .... don't really know what this is all about, worried it might be tumor enlarging (despite PET/CT showing stable soft tissue tumor 2 weeks ago), worried it might be early truncal LE, trying my best to just do "benign neglect" and just ignore it for now. I am seeing an LE specialist next week, so figured I can wait until then to figure out what is going on.0 -
"I finally had a thought that LE is like a baby, you have to take care of the arm several hours a day, change it (at least it's not poopy bandages!), take care of it when it gets angry or cranky or hurts, etc. You love it, you care for it. You get the picture. Well, I swear I would like to just drop this baby on the doorstep of the nearest convent or at least put it up for adoption"
Thx Linda youve given me a good belly laugh for the day.
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cellulitis ..shucks. Next time I will recognize the pain in the elbow as the first symptom for me as my daughter says I always get that first. It is already retreating between the 2 shots in the hiney and the oral meds....my poor tummy. Probiotics baby
Maggie0 -
Leah_S - How is the cording in your "good" arm?
I really, really, really, REALLY hope you don't get it in that arm too.
Please let us know how it is going.
Big hugs to you!0 -
Mags, for goodness sake rest up and get better soon! I'm so sorry that you have had enough experience with cellulitis to be able to recognize a pattern -- that rots! But glad it's responding. Now to take care of your poor tummy…never seems to end, does it?
Please keep us posted. Gentle hugs,
Binney0 -
Tried on a pair of Lymphedema sleeves today - they won't work
It looks like I will have to go custom or get creative with the juzo sleeves - I am sooooooooooo bummed.0 -
I just ordered 3 in the shorter length they have available and they worked for me...sorry GmaFoley....they are def not as soft as the Juzo sleeves that is for sure and you can get those nice colors in Juzo too!
Mags0 -
Linda, love the baby story. It is so LE identifying. In fact.... I think I am going to call my arm Baby Emma. I just know that no one is going to adopt Baby Emma and that she will be mine for life.
GMA, Super Bummer on the sleeves. They are so pretty but not the best fit for me. I told Josh, max short and he said, for the future, once his base gets built up. Some of us have conical shaped arms. (baby emma, requires larger sleeve at the top)
take care all0 -
Oh, GMA, I'm sorry about the sleeves. That must be so disappointing! I hope you find something that makes you feel better soon.
I am grrrrrring about LE again today. I was at a retinal doc's office today (don't ask) and one test required an injection in my arm. I said "no can do." Then I had to get lab work which requires getting it from my ankle. Oy vey. Sick of it.0 -
LOL hugz conical shape? I think baby emma has a twin, are you sure you don't want it back?0
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i hate it too nothing seems to make it go away, i too do it all, and still fat arm i hate it hate it hate it
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my dr always says oh it doesn't look so bad i always say well it feels bad
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Ann, I get told the same thing. Ya, not so bad? Who are they trying to convince? They'd not say that if it was their arm.0 -
I'm going to call my arm Rosemary. As in Rosemary's Baby. Because that pretty much describes my fondness for it.
I was looking at my puffy hand this morning, and kicking myself for all the carrying and shlepping I did yesterday. Jim, (my DH) just walked by and I pointed out how swollen it is. 'It doesn't look so bad', he said. Today I'm in the mood for a bit of sympathy so I told him that it really hurts. He looked concerned and said that he'd take the dog out this morning. Honestly, it doesn't really hurt but it's uncomfortable, and annoying and I just want to put it in a pram and leave it on the doorstep.0 -
I was watching my 2 year old great niece this morning. She had been telling me about being Minnie Mouse for Halloween. As we were talking I put on my LE sleeve and gauntlet. She looked at me with a very puzzled look and asked, "Who are you?" as she was trying to figure out what cartoon character I was. So sweet, and some days, having Lymphedema does feel like a cartoon character!0 -
Denise, sometimes I am feeling like a zombie (I think - aren't those the walking dead?) or else a mummy - still bandaging at night cuz the night Tribute still makes things worse rather than better. Still hopeful on a custom sleeve in the next few weeks...
Janet, I love the name you picked out for your "baby"
Have been contemplating the right name for mine .... Hugz4u, Baby Emma just sounds too nice, too gentle ... must be because you are a kind and gentle soul - me, not so much! Maybe "Khan", as in "the wrath of ..."0 -
Today I decided I had to do something about my puffing arm since my new custom sleeve just isn't working. I goggled Juzo sleeves and opened up several links to find the best deal. Did you know Walmart is now selling them? I ended up ordering a dream sleeve and and a tan one like I had my first time. I figure something is better than nothing. I got them from Metro Medical supplies because they had free shipping today. Now for a solution for the legs....maybe in Jan. My lovely place after almost 4 weeks hadn't even looked into the cost until Friday to only realize I had never ordered from them before so they didn't know what to order. I give up...I told them up front I had never used them because of change in insurance. grrrrr0 -
Hey guys: I've been "lurking" for awhile now. Just wanted to pop in and tell ya all GRRRR i HATE LE. i have more luck with the non custom sleeves, gloves than with the the custom.. go figure..
the links I found tonight for the isotonener gloves was great! Gonna order a few.
The barametric pressure is KILLIN me tonight, hence i'm upm late again..
Just know, in time it calms down, or at least it does for me. I can't STAND the sleeves tonight, so i'm just suffering though it.
personally; I like "rosemarys' baby the best!
Extra brownies, girls , all round! 3jays0 -
barometer is killing me too.
Huge storms around me the last 24 hrs and my arm always hurts when they occur.
Last night I had shooting pains down my arm...all weather related.
I'm a walking barometer.
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There is such nasty weather going on in the upper States and south western Ontario which I'm afraid may be headed out way. However, having said that I wore a new (custom) sleeve today and seems it's feeling mighty fine. A Juzo Dynamic. (The only kind I've always had.) I like high barometric pressure too.0 -
Marple, A garment that feels good is nice news. Nice that you have no grrrrs today. Wish we were all in the same boat.
Janet, Yah naming a LE arm, Rosemarys baby is so dead on. I think I was to kind to call my arm Baby Emma. I need to get a more suitable name maybe like Wretchen Gretchen or the Devils Advocate or maybe the short form for Wicked Witch of the West. WWW. Yah.... that is more suitable.0 -
I hope it was just the storms that lasted well into the wee hours of this morning, but I woke up with a very visible swollen spot under my shoulder blade. That has happened in the past after activity, but not just from sleeping! I've long suspected that wearing my sleeve while exercising tends to push the fluid to this pool on the back, and now I have to consider if my nighttime Tribute does the same thing. GRRRRRRRRR!0 -
carol57 -
grrrr indeed! No words just sitting here shaking my head … hate this condition. I really do. Hope it gets better soon.
If it makes you feel any better … my arm is still killing me from the weather. So much so that I decided to run on the treadmill for ten minutes tonight. My knee doesn't like it much but when my arm hurts and won't feel better no matter what I do, running is the thing that always helps it. :? Strange. It does feel better but it still doesn't feel 'normal.'
Hugs and chocolate all around. xo0
